CDH Stories

My little Justus was born with with a severe right side CDH in 2005. It was not diagnosed until birth, in an inadequate hospital in Alaska. With a zero percent chance of survival, and after the bad weather cleared .... 18 hours after birth.... He was life flighted to Emanuel. My wife, stuck in Alaska with PIH was unable to fly to Portland and unsure if she would ever hold her baby alive. He was pre ECMO and was scheduled to have the procedure on a Wednesday night, as I lay in my bed in the ladybug room at the NICU... That night, God touched my little man and stabilized him. No ECMO was needed.

My wife arrived at day 7, he underwent surgery on day 9 with Dr. Davis Bliss. Three months later he went home to Alaska. Six or so surgeries later, many hospital visits and a few failure to thrives...In May 2010, we moved to the Portland area where I continued my career. The move was to get him closer to medical resources.He just turned 8 on March 13, 2013.

At our 20 week ultrasound appointment Wednesday March 31st 2010 (ironically CDH Awareness Day), my husband and I were thrilled to get the news we were having our second girl. That news was quickly overshadowed by the fact that our baby had a serious complication. We were told that our baby had a left-sided congenital diaphragmatic hernia (this happens in one in about every 2,500 births) which means the diaphragm didn't close entirely when it was supposed to and some of the lower organs (in our case; stomach, intestines, and spleen) are up where they shouldn't be. As a result, the lungs wouldn't grow to normal size and our baby was at risk for a laundry list of complications that ended with the statement that she had about a 40-50% chance of survival.

Our sweet Grace was born two days after her due day on November 15, 2001. After much ado with her heart rate dropping due to the umbilical cord being wrapped around her neck, she arrived with a loud cry! I'll never forget as the nurse handed me my sweet baby girl and reassuringly said, "Look at her she's pink and healthy". Little did we know our Grace would show signs of distress at her two week check-up with labored breathing, a heart murmur, and a coloboma in her left eye. We were immediately sent to Emanuel hospital in Portland, Oregon where we were rushed into ICU as Grace's coloring looked much more blue than pink. Later that day, it was determined after running many tests that Grace had a Congenital Diaphragmatic Hernia.

Looking at the x-ray with the surgeon, my husband and I felt somewhat relieved that it wasn't more serious. After all people get hernias everyday and have surgery and then are just fine- or so we mistakenly thought. You see, we had no idea how serious CDH is and further, had no idea the problems that seem to follow these little ones long after their initial hernia repair.Grace was one of the lucky ones. She sailed through the surgery and was out of ICU and off oxygen just days after her operation. The surgery had gone very well and we were home in less than one week. What a relief to have it behind us and I, her mother, felt she would thrive at home. The difficulty began with feeding her. She would fall asleep within the first five minutes of nursing, had difficulty gaining weight, and it started to appear as if she was uncomfortable as she would squirm and arch her back.

We were referred by our pediatrician's office to a developmental pediatrician. She observed Grace nursing and suggested a NG tube because she felt she wasn't strong enough after surgery to do it herself. She wouldn't take a bottle so there was no other way of increasing her calories. We were very hesitant to pursue this, but it was becoming apparent that she needed some type of supplementation and we felt that if she put on some weight she might be strong enough to nurse on her own. Grace had the NG tube for about six weeks. We tried to remove it once but she had difficulty gaining weight. She started to arch more during her feeding and spit or vomit frequently. To our surprise, the developmental pediatrician seemed to have no explanation for this and instead referred us to a gastroenterologist for a gastrostomy tube (G-tube).

My son Samuel Scott was born on Friday, September 13, 2013 and graced us with his presence for three weeks. In honor of his first birthday I am sharing our story.

We were living in Austin, Texas and found out I was pregnant the day the University of Texas longhorns played the Oregon State University beavers in the Alamo bowl. My husband was born in Texas and I in Oregon. How perfectly fitting and a fun story we would tell for years to come. At the highly anticipated 20 week ultrasound and anatomical screening I was nervous. I was healthy, all previous appointments went well, and baby was growing above average. I already loved our baby and the idea to know the gender was more excitement than I had ever experienced. The ultrasound technician joyfully announced we were expecting a boy! She excused herself and a doctor came into the room. He congratulated us then said the words I will never forget, "we need to discuss a significant issue." The doctor explained, "your baby has a congenital diaphragmatic hernia. This means the diaphragm has a hole which allowed abdominal organs to float into the chest area. The good news is that his heart looks great. The bad news is that his lungs do not have room to develop normally." I waited for him to say, "this is worse case scenario." There was no this is going to be Ok. There was no order to take extra vitamins or go on bed rest to cure the condition. We were moved to an office where we met with a counselor. She explained major surgery at birth would be required and survival rates are 50%. They offered additional testing to identify underlying issues and the option to terminate the pregnancy. We declined further testing and termination. If Sam had any chance of survival we wanted to give it to him. I was transferred to a high risk doctor for the duration of my pregnancy, scheduled additional ultrasounds, and attended a care conference. The care conference was a group of doctors, nurses, surgeons, patient advocates and so on. The room was packed with people who would take care of my family during delivery, Sam's surgery and our stay during his recovery. In the coming weeks we researched and discovered we knew a few CDH survivors. I focused on the most positive outcomes and bonded with Sam. He was an active baby and so good to me. I felt great my entire pregnancy. On my due date Sam was not ready to meet the world so I was scheduled to be induced at 41 weeks.

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Free CDH Book

This patient guidebook is a free educational resource for families with a child who has Congenital Diaphragmatic Hernia (CDH). It includes text, illustrations and multiple videos on: What is CDH? Prenatal Diagnosis Pregnancy & Delivery Management Prenatal Fetal Intervention After-Birth Surgical Repair Long Term CDH Complications Home Care Support Resources Common Medications The guidebook is written and produced by the faculty and staff of the University of California, San Francisco (USCF) Pediatric Surgery

Make A Donation

The Ladybug CDH Foundation is a 501(c)3 non profit organization and all donations are tax-deductible. All donations go to northwest families affected by CDH. We will send you a receipt for tax purposes and any amount is greatly appreciated.If you would like to send a donation in memory / honor of someone, we will send a letter acknowledging the gift. 50% of our donations will go towards research projects and 50% will go towards financial assistance to families affected by CDH in the Pacific Northwest.